Thursday, September 15, 2011

Light the Night plus Carfilzomib Update


As many of you know the Light the Night walk for the Leukemia and Lymphoma Society will take place Thursday, Sept. 22 at Wash Park in Denver. All walkers on my team are invited to a prewalk party at Darin and Liz Schanker's home, 818 S. Franklin, directly to the east of Wash Park, sponsored by Darin's law firm, Bachus and Schanker. The prewalk party starts at 4:30 p.m. and the walk will start around 7 p.m. Please come out and walk to help bring awareness to the need for a cure for blood cancers. Donations can be made at

In the four years that I have participated in the walk we (you!) have raised more than $89,000. That is a huge amount of money for one team to raise. I am very grateful for all of your support over the years. The monies go to blood cancer research, patient services and financial assistance for patients.


I have been the beneficiary of a number of new drugs that have been developed with the help of LLS research monies. Velcade was one of those drugs. Carfilzomib may be another (not sure). These research monies are critical because 1. drug companies do not typically become involved in initial research but rather wait until drugs show promise through government or private funding before they become involved, and 2. many blood cancers, especially multiple myeloma, become drug resistant and therefore new drugs are necessary to keep the cancer in check.

I started on carfilzomib last week. I receive 2 doses a week, along with dexamethasone. Carfilzomib is similar to velcade, i.e., a proteinase inhibitor, with the benefit of showing efficacy after velcade has failed. That being where I am: velcade no longer works on me. Carfilzomib is about the last drug out there for me so we're keeping our fingers crossed. I'll have bone marrow biopsy the end of October to measure the progress. So far, no significant side effects.

My blood counts have been so low, particularly my platelets that I've had a series of nosebleeds. The last one lasted more than a week (yes, 10 days) and required packing my nose for 3 days (not fun) and even that didn't work. Monday's transfusion of blood and platelets seems to have put an end to that nonsense. Ever try walking around with a balloon in your nose and a tube coming out of your nose and taped across your cheek? I wouldn't recommend it.

Hope to see many of you on the 22nd at Light the Night. Thank you again for all you have done and continue to do for my family and me.
Love to all of you,